Weening off Prednisone

Short version: 1 year of not being diagnosed utter hell. Then found out thru Internet the possible diagnosis of PMR. Told doctor who gave me prednisone told me to take 15 mg but I took 20mg. The next day I was able to not only get out of bed without intense pain I was also able to raise my arms n comb my hair. I had no idea what prednisone was nor all its side effects. Then I was diagnosed with GCA and we went from 10 mg up to 50 for one month then 40 30 etc.

I am now Down to 7 mgs and have lots of pain and my fear is I will have to stay on this med for a lot longer than I was reading others say. I started Prednisone in April 2015.

Once I got a Rhuematologist she started me on all kinds of meds one of which for the last 6 months is methotrexate which I finally stopped and told her never again. It felt as if I was poisoned. My elevated alt of 37 went down to 25 in one month after stopping.

Now back to my title. I am supposed to go down to 6 mg this week. Yet my labs still show elevation in inflammation and my wbc continues to stay high for months. It is now 16.7 and I can hear myself wheezing when sitting still n doing nothing. No one knows where the infection is from wbc elevation.

Sorry about writing a book but I am feeling so sad thinking I will have to up the prednisone again. I have gained 40 lbs when on methotrexate it was awful.

Does anyone know what dose keeps us pain free?

55 Replies

  • I'm so sorry you are suffering, my mother has PMR and iis currently reducing her dose and so far it's going ok but I'm panicking a bit as I fear she is reducing by too much and too quick. I believe that if you take it really slow your body will hardly notice the slight change. We have found the PMR support group really useful. The number is on the website.


    You probably need to go back to 20 and stay there until you feel better then start very gradually reducing. I'm not an expert by any means I'm just saying to you what I'd say to my mother if she were like you at the moment.

    Give your doc a ring for proper advice and try not to be too hard on yourself . Take care

  • thank you so much for your advice. I have had such horrible side effects from the high dose of prednisone that my goal is to get off it as quick as I can. I now see my idea of off prednisone an I would be healed is a crock. My doctor is the one trying to get me off quickly. So back to reality …..

    This morning I went back up to 10 mgs and will stay on it for at least a month. Going down recently every two weeks and it is not working so well.

    Each new side effect resulted in a new prescription. I am trying to get off all of those also. My personality is fast and furious an I am not used to being side lined like this.

    I am thanking God I found you folks as none of my family or friends realize how awful this is.

  • I'm currently on 40mg steroids since suspected gca along with pmr . For about a month now and hate side effects . Seeing rhumy on Thursday . Am terrified of 1st taper ? .Dammed if you do , Dammed uf you don't . I too hate not being in control . They are amazing in here though . Wish you well

  • Hi Debbie

    I understand what you are saying. Before I git the second diagnosis of GCA it seemed like a blip in the road n time to slow down. But with the thought of blindness every right sided headache makes me wonder if I was going to fast to knock that out. I am now learning to read my own labs n trying to figure it out. I have found the clinical studies frim the UK to be the best thus far.

    The 40 mgs is tough I had heat sweats n hot flashes along with mod swings. I had to remind myself it was the med and not normal. The UK studies say start at 60 for GCA so try to stay at 40 as long as you can tolerate it. At least 6 wks maybe then drop down. I am thinking I made a mistake trying to get down to quick. I went 50,40,30,20,17.5,15,12.5 then 10 all for one month then I was supposed to go 1 mg a time to zero. I hit the wall of pain at 10 n should not have moved down...listen to your body..


  • Hi Lin , mega flare today after zealous bike ride :( I'm on 40 pred do you think I should take 50 or 60 now as a precaution ?

  • You need to go easy with exercise. More rest and recuperate. Please know your doctor started you on meds according to your labs. Learn about your labs for yourself then you will know if doc knows what they are doing. What GCA symptoms did you have? I had jaw claudication, sores on my scalp. Railroad tie pain in temple.


  • Same . But asking for dos safe for right now really I've just taken my usual 40 so don't know if to take extra 10 or 20? For flare ? I'm assuming I should up during a flare ?. I don't see rummy till thurs which is 1st visit and deffo not going to hospital on a Sunday anyway can't drive really ?

  • I don't mean to put a dampener on you trying to keep active but you probably are not giving the treatment the opportunity to do its job if you are going for bike rides with GCA and a pred dose of 40mg. In my experience on that level of steroids you really need to rest, slow down and give your doctors the chance to treat you. They have prescribed a medication because you have a serious condition and one which requires pacing and rest. Increasing your medication may not be the answer especially if you are doing that to treat the effects of over exertion rather than an exacerbation of the GCA. Accepting that you need to slow down is one of the hardest things at first but it is also one of the most important messages I received here.

  • No - don't raise your dose like that without discussing it with a doctor, it is a very different matter from adding a couple of mg in PMR. You shouldn't increase thinking it will avoid a flare, all the pred is doing is managing symptoms and only if you do have symptoms that aren't being managed by your current dose. 40mg is the normal starting dose for GCA, it is high, the very high doses are kept for use where there is a threat to vision, when there are visual symptoms. Avoid stress where you can - and heavy exercise is a stress on the body, even if you were used to doing that before.

    As lin says - you need to go easy on exercise and there are loads of posts on here about that. Your muscles are intolerant of exercise and fatigue easily because of the underlying autoimmune disorder and you have to learn to pace and rest appropriately. You wouldn't have gone for a bike ride if you had just had proper flu would you? GCA is a serious illness, it deserves respect and allowing your body to heal. Gentle exercise is fine - walking, a gentle cycle on the flat for example

    Here is useful link:


  • No do not up your med on your own. My doctors instructions were if I did not do well to go back up to previous dose.. Please stay on your regime with your doctor.

  • Hi Lin I'm afraid at 8am I did I took an extra 10 mg and now I don't know what to take tomorrow 40mg or 50mg ?

  • Oh NO! Please do not do that. Tomorrow take your regular dose. Talk to your doctor. None of us should do anything different just because it worked for someone else. Take it easy today you might get extra hot flashes..😓

  • I did so just rested all day . I panickedI guess !! So will take regular dose tomorrow

  • I am having a flare also and was beating myself up. i found this site n am feeling like it isatrue lifeline. By mistake I double dose. when on 50 talk about panic.

  • Omg what happened !!

  • I first off panicked then I called the pharmacist and he told me to stay calm and skip the dose for the next day. That day on 100mg I was having a few extra hot flashes. I also went to Tango class and danced for at least an hour. At that time I did not realize I was making a mistake by not resting. I forced myself to walk 1/2 mile per day and danced 2-3 times a week. I felt like I was simply being lazy and my friends kept telling me I needed to do more.

    I now live on my own in a studio apt which I love as it has everything I need in it and easy to maintain. I don't know what I would do with my old home as it was so much yard work and house work etc.

    I want you to know my HUGE mistake was thinking like my doctor and thinking I could get off this drug in less than 2 years.

    I just now read a post for the Regimen we should be on for GCA and PMR. When we get to 10 mgs it should be maintained for 1 yr.

    So if nothing else I hope I can help someone and you to not do what I did and focus only on getting off prednisone. I wished I had known about this site when I first got sick.

    Learn to enjoy reading a book and don't feel guilty about it. this one is for me too….

    Know your limits and keep them. If you do something strenuous one day like grocery shopping plan the next day with a book or something fun like games on computer.

  • Thanks Lin that's so helpful I wish I could take you to the rheum my with me in Thursday !! I'm wondering what my 1st taper from 40 mg will be ??. So are u still on 10mg or prednisone free ?. My house is too big for me too but until my daughtergoes to uni I'm stuck . I dance retiring to Portugal it's warm . I'm currentlyis Cotswolds . Thanks for making me panic less x

  • Wow! how fun here less than 30 hrs and I am wanted lolololo! The regimen for GCA is normally started at 60 mg. that freaked me out so I asked for 50 mg.

    The standard is

    60 mg for 4 weeks

    50 mg for 4 weeks

    40 mg for 4 weeks

    30 mg for 4 weeks

    20 mgs for 4 weeks

    Then as per PMR regimen for 104 weeks

    15mg for 6 weeks

    12.5 for 6 weeks

    10 mg for ONE YEAR!

    then reduce by 1mg per month thereafter.

    I went from 10 mg for 2 weeks to 9 down to 8 then I was on 7 with flare ups all the way down from 10.

    My doctor originally said to go back up to the dose that held me an I now will be talking to her about staying on the 10 mgs for ONE YEAR.


    I am working on trying not to let the prednisone be my only focus in life which it has been. I wanted off this as fast as I could.

    Yet for the last week my dull right sided head ache is back and it is worrying me. That is when I found this site.

    I think if you did not start at 60mg you should talk to your doctor about staying at 40 for a while longer to make sure of its effect. It will be up to your doctor. The UK has done great clinical trials and I trust their results.

    I am off to my apt now. I am hoping to have wifi in my room soon. I am in California, USA

  • Thank you for all that night night

  • Lin, please don't get fixated on the idea of HAVING to remain on 10mg for a year. See how you are symptom-wise when you reach that dose. I managed to decrease by 1mg a month from 10mg although some people find 10mg, like the 5mg level, can be a bit of a sticking point, but just slowing the reductions down or tapering slowly at that stage can help, as can continuing reductions in just half mg decrements. So, one step at a time, and steady as she goes!

  • Thank you Celtic. You will see I tend to jump and then wonder where the lake went. I truly can't explain how finding this site has helped my mental status so much. It is nice to know there are those of you who know the ropes and are ready to help.

    Again, Thanks!

  • Determineddebbie, can you share some of your personal side effects?

  • Hi , yes the usual weight gain , sweating& urinating every min and probably loosing vital electrolytes. However it was the hyper , not sleeping . That got me

  • I found it really difficult to distinguish steroid withdrawal and PMR pain. However now 4 years into the condition just about have it nailed. Weaning down on steroids using the dead slow nearly stop method and now on 1mg. I am sure someone will be able to post the link for you and advise despite what the medics say it's not a race to get off of the steroids. Lots of people require longer than the 12-18 months the GPs recommend, to get the condition under control. Wishing you good luck with your journey.

  • Thanks for your response. As much as I hate hearing you have been dealing with it for 4 years your response has really helped me see I am not in a race.

    I will work on taking a deep breath and slowing down. This is awesome that I found all of you here. It makes me feel so much better knowing there is help out there.

  • Hello Lin-Calif, if I have read your post correct are you saying that you have both GCA and PMR and have reduced from the highest dose of 50mgs to 7mgs in just over 15 months? If I am correct and you are experiencing continued pain and elevated inflamation levels that tells me that your inflamation is NOT under control because you have reduced to a dose of preds that cannot control it. I am not a dr but I would increase my dose of preds to the level of the last dose where i felt my most comfortable, and from there adopt a much more realistic reduction programme.

    You say that your blood inflamation results are high, so what does your dr say about that? Surely they are not requesting that you reduce further with results like these?

    Your wheezing could be because of all the weight you are carrying or you could have a chest infection, in which case, go and see your dr and get a diagnosis and treatment for that.

    However, returning to your GCA and PMR, neither of these conditions are curable, they are however treatable and from what I am reading your treatment plan has been reductions that have been too great and too rapid. As I say, go back to the dose where you felt comfortable, then reduce by no more than 1mgs every 6 weeks. I only reduce by .5mgs every 6 weeks. I have adopted a reduction programme based on the dead slow and almost stop method and thus far am doing ok. Good luck, tina

  • Thank you Tina for responding. OK when I was reducing by 2.5 each month down to 10 mgs. What would happen is the first two weeks of reduction I would have break thru pain then the last two weeks it went away.

    So I figured it was my body adjusting to the lowering dose. My doctor is not happy I stopped the Methotrexate but I will never go on that again. One month off of it and I am not ravenously hungry nor feel like I am poisoned. My friends say I sound like I turned a corner and I did.

    My doctor is over an hour away if I don't hit traffic. Where I moved to there are no Rheumatologist available. I am 65 retired on Social Security retirement and on medicare. There are no doctors in my area available to take medicare. So I work mostly with my GP who knows about my case and I really like her. She is also new to me after my move.


  • I say listen to your body Lin, you heard a lot about the side effects of steroids but Methotrexate I feel is dangerous and only be given is most severe cases and only for ad long as really needed. Some folks have been on steroids for years some for most of their lives and of course there are side effects as with any med... prednisone is a hell of an anti-inflammatory which is what start so many diseases... there are also a lot of anti-inflammatory Herbs and supplements to look into.

  • Recently I started thinking just what you said. I was listening to my bidy n realized I needed more help n walla I found all of you.

    My gifts from God you all are.

  • Hi Lin, You are on the right track but I fear there is no magic dose that does the trick. I made club Zero in a year after GCA and 1 eye loss of sight. Aches and joint pains stayed at about same level below 7mg/day in my case and still hang around after reaching zero, so I reckon it's the price I pay for keeping my vision in my remaining eye. Don't mean to spoil you hopes, just telling it as it turned out for me. Maybe you'll fare better, but wouldn't expect too much at the end of the pred line.

  • Thank you raymck, My fear this last week is the GCA due to the headache is back and my right eye is aching. So sorry to hear of your loss of sight which as you know is a big fear. As to spoiling my hopes you folks have given me renewed hope as I was not getting very far with my doctors believing me. They all seem to want to get me off the prednisone quickly.

    I think it is due to the cardiac issues started after higher dose of prednisone. I would get tachycardia sitting still. My heart raced over 90 all the time. So of course I am now on yet another med. I also had what they call sinus pause where my heart would skip a beat 4-5 times a minute and I could feel it.. Not fun.


  • I have atrial fibrillation - probably due to damage caused to the electrical cells in the heart by the autoimmune part of PMR. Also very well controlled by medication. Such things happen as we age - and more often in patients with autoimmune disorders.

  • Sorry to hear you're not feeling too well. As you have been diagnosed with GCA as well as PMR and have been on two immunosuppressant medications in the recent past it is really important that you make any medication changes in close consultation with your doctor, especially if you are contemplating a substantial increase in your prednisolone dose. He or she needs to check how you are, the reasons for how you are feeling at the moment - and it is much less lonely and anxiety provoking to make changes with the support of a clinician alongside you.

  • Yes, thank you Cloud as I went up today to 10 mgs from 7 and am going to try to see my doctor next week. My appt isn't until the end of the month of August so hope to get in sooner. Being an ex nurse you would think I would have this under control but it is as if everything I learned has vanished.

  • I think having clinical training can make managing a health problem more difficult sometimes, not that it's ever easy in any circumstances. If you've had a clinical role the 'I should know this' mantra kicks in - but you're still human, and in pain and feeling ill. That's a lot to be managing - no need to be your own doctor and nurse all rolled into one too

  • Hi Lin-calif,

    Unfortunately there isn't a magic answer to what keeps us pain free. It's the level of Pred that keeps the inflammation under control - and that varies from one person to another.

    As Tina-Shelley has said, you have reduced too quickly, not your fault if that's the advice you were given. The main thing to remember is although the Dr may give you his/her plan of reduction, you need to ensure it is good for you, and very often their plan is too optimistic.

    Suggest you go back to the level you last felt relatively pain free (not everybody is completely pain free) and then reduce more slowly in time and dosage. I know it sounds a drag, but unless you are very fortunate, it's really the only way to do it. PMR and GCA have their own agendas and no matter how you try, you cannot rush them. So whilst you've got it/them you might just as well take enough Pred to keep the pain at bay.

  • First off DorsetLady I love your smile. How did you get your picture up?

    My very first doctor was trying to get me off in less than 4 months she had no idea what PMR or GCA was. Then I moved got another doctor and it was great. Until she put me on methotrexate.

    Moved again final move by the way and now have a doctor I trust.

    My biggest fear right now is getting the moon face back. I know it sounds vain but it wasn't that as much as it was awful as I had so much edema in my face it hurt to lie down on my pillow.

    That is the one side effect I do not want back. I still have some of it but it is not tight on my face like it was.

    I am not worried too much about the pain as long as I can do things. I ride my bike once or twice a week and I know the day after I will pay for the mile ride to and from our library. I figured it is the price I pay to enjoy the ride. I definitely do not go more than a mile as I learned that was not a good thing at all.

    But now on the 7 mg I am not even able to walk far let alone ride my bike.

    I will talk to my doctor again soon but in the mean time I will go back up to 10 mgs and stay there for awhile.


  • Hi again,

    Thanks for your lovely comments. If you want to download photo just go into your profile and click on the appropriate button - you can then select one from your library.

    Good idea to stay at 10mg for a while. 7mg can be quite a difficult dose because your own adrenal glands should start working again then and if they are a bit on the slow side then you can get extra problems.

    Good luck.

  • Hi Lin-Calif.

    wow! It sounds like you are really being stressed, managing this PMR GCA beast! PMR/GCA is not life threatening, but It is life changing. ....AND.....you will live through this experience, with your vision intact!

    But for now, it sounds like you are still living with an active disorder and prednisone is the only treatment.. If you are still having pain, you need to stay on pred at a dose level that will keep the dragon happy.

    I suspect your dose is too low. I would say you need to Return to the dose that provided you relief, and stay there for a while.

    I am not the expert medical person here, those folks will soon be waking their keys, and giving you plenty of support.

    I have had PMR since Oct, 2013. Currently I am taking 2-3 mg pred daily. That dose sounds tiny, but it really does keep my inflammation down to a level where I can function at a near normal level. (Remember those days?)

    What I know,

    if you are hurting a lot, you Need more Pred

    Most likely, you may not be totally pain free. That being said, some over -the -counter Acetaminophen tabs (paracetamol) can really help.

    For right now, try to relax and trust what I say.....

    You are going to feel better

    You are going to lose the weight

    You are going to be Normal again.

    This forum is your source of information, support, and big virtual hugs!

    I send you one now😘❤️😘


  • Thank you Jerri, Your words have already made me feel better and I will trust what you say. I am on the losing weight side…. it is only 2 lbs but it is going down and not up. If you knew me better you would know I will never be Normal but I can be a lot of fun.

    I love this forum already and am glad of the information, support and big virtual hugs. They say we need 12 hugs a day to stay healthy ..

    So here is a big hug for you and all the others who have helped me today.


  • Lin, I, too, spent an horrendous first year, with many months stuck in bed in agony, due to a lack of diagnosis from GPs and a rheumatologist. The pain very slowly and spontaneously resolved towards the end of that year only to return together with even worse symptoms. Three weeks and three GPs later, a wonderful pharmacist suggested PMR/GCA, later confirmed by an equally wonderful rheumatologist. 40mgs of Prednisolone worked its magic and the worst of my GCA symptoms resolved within hours although the PMR pain proved a more difficult nut to crack.

    I am now PMR/GCA/steroid-free, BUT it took 5 1/2 years of treatment to reach this state.

    It seems as though you are just 15 months into treatment for PMR and even less for GCA. Flares in the inflammation can be quite common in the first 12-18 months of treatment, the main reason being that someone has either reduced their steroid dose by too large decrements or too soon, and therefore not got completely on top of the inflammation. It is also important for us to help manage the condition by having plenty of rest and not overdoing things on a good day or PMR will have a habit of coming back to bite on the next.

    There is no hard and fast rule about reducing steroids. It is all trial and error and what suits one person may not suit another, therefore it is not possible to have a fixed plan in place. BUT what is known is that the smaller the reductions in dose and the slower the taper to each new dose, the easier it is to keep the inflammation under control.

    It took me 5 1/2 years to reach remission and zero Pred some four years ago now. Once at the lower doses I took seven weeks to go from one dose to another, ie one day at the new dose, followed by 6 days at the old dose, two days at the new dose, followed by 5 days at the old dose, etc. This proved very successful for me and this and slight variations are continuing to prove successful for many others.

    Importantly, if your white blood count and ESR and CRP markers of inflammation are still abnormal, then you need to increase your dose to a level that controls the inflammation and brings those markers down to within normal. The sooner you do that, the better to avoid the risk of building inflammation needing an even higher dose to control it.

    Of course, at the same time you need to rule out any other infections/viruses that might be lurking as these can also push up the blood markers and cause such things as the wheezing you are experiencing.

    Do read the book by Dr Kate Gilbert, 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. It is available on Amazon and direct from PMRGCAuk, pmrgcauk.com, with all royalties being donated to the Charity.

    Be strong - you can get control over this rather than it controlling you. The first thing I did, once diagnosed after having lost complete control over my life in that first year, was to research anti-inflammatory foods and avoid those known to be inflammatory. That was my way of getting back some control over my body. Later, I added in more things like Tai Chi and Nordic Walking. Throughout, I had a daily walk, even if I could only manage 5-10 minutes in the early days - excellent for raising those 'feel-good' endorphins.

  • Wow this is amazing finding all of you.

    In my first year I was sent to a chiropractor which felt like torture and I like chiropractors. Then Doc sent me to Physical Therapy where they told me my shoulders were trapped that the muscle had worked its way under a bone. RUBBISH! Another few months of torture.

    I was very kind when I went back to the both of them and told them in the future to think PRM if someone comes in with my symptoms.

    I shall get the book next pay day thank you for the recommendation.

    I too am trying to find out what is causing this and am looking at the inflammatory foods. I do a Tumeric Tea and have been working on doing more stretches. I try to put Tumeric on as much foods as I can. It has a rather strong taste but I also put in cinnamon ginger and on occasion I blend it with half n half cream. OK the cream is not needed but it is yummy and makes the drink go down so much better. Oh also put in cayenne pepper.

    I want to find a swimming pool to use to see if it will help with keeping me active as I love the water. Even floating in water gives me a sense of peace.

  • Turmeric needs a tiny bit of black pepper. Studies show that the piperine makes the anti inflammatory properties of turmeric much more bioavailable (apparently they aren't very bioavailable otherwise).



    If you live in a part of the country where cannabis is legal, try to get your hands on some CBD oil. It has no psychoactive properties but is supposed to be very effective in treating inflammation. Have not been able to try this myself.


    Hope you get this latest setback in hand very quickly. I personally feel that PMR was sent to teach me patience....

  • Yes I forgot I put in black pepper also. I do not have computer access yet in my apt. I am waiting for the cost to come down.. haha in the mean time we have computer room to get online n save my phone data. I also have a hot spot on my phone n can use my ipad with it...

    I have prayed for a lot of things and patience was not one of them. I knew it would never be a fit for me😜

  • :D

  • To have got from 50mg to 7mg in 15 months when you had GCA is actually very fast. If you see people on lower doses than that is is very probably because they had PMR not GCA, you start with about 15mg and work down. Even optimistically over 2 years is the usual time to be able to even think of getting off pred - but it all depends on what happens. If you develop flares it takes longer as you have to go back to a higher dose and start again. The more that happens, the more difficult it seems to be to reduce subsequently. For half of patients, the length of time to get off pred in PMR is 5 years, about a quarter manage in under 2 years but are more likely to relapse later, about a quarter are far longer. I've been on pred for 7 years after 5 years of untreated PMR and am currently at 10mg after a flare.

    No, no-one can say a dose that keeps you pain-free - everyone is different. As the others have said, if you are in pain then you aren't taking enough to manage it. If it is PMR (I'm assuming those are the symptoms you are talking about) and a higher dose doesn't sort it out then it possibly could be other things - but if the pains are GCA-type pains then you definitely need more to avoid that recurring which, as Celtic has said, is very common in the first 18 months or so after diagnosis of GCA. Flares are very often due to reducing too fast or too far - I'd say you have done both.

    This is a link to a fairly reasonable rheumy-given reduction:


    and this is a link to the slow reduction plan some of the others have mentioned:


    Many patients on the UK forums have used it successfully and it is in use in a rheumatology study in the north of England. It helps avoid the problem of needing to distinguish between steroid withdrawal pain and a flare because the body doesn't notice the reduction as much - so doesn't protest.

    There is no virtue in taking too low a dose of pred - you have no benefits to balance out the downsides. You can help the weight problem by drastically reducing your processed carbs intake. There is no real evidence that any other meds help reduce the pred successfully, methotrexate helps some people but not others and is recommended as an optional extra if it doesn't make the patient unwell. Nothing else has been shown to have a reliable effect. Nothing replaces pred and you will need some as long as the underlying cause of the PMR symptoms is active. I have to say - I wouldn't agree to a rheumy experimenting on me with unproven drugs.

  • I went to the links and have copied off the information. Thank you so much for your help. I have not heard from my Rheumy since I faxed her I was not going to take the methotrexate any longer.

    I want to see if my new GP who actually listens to me can take over my care if I give her the studies and schedule of withdrawal.

    I know now why I have been racing to get off and it is all about getting back my life. But this one day of visiting with you folks has truly turned on the light for me an I will accept what I can't change and do the best for myself I can.

    I refuse to get depressed so on occasion I have a sad day then I move back to the fight of getting more information.

    Thank you so much…


  • Getting your life back means pred and accepting you have a new normal to adjust to. Fighting PMR and pred just wastes a lot of energy you can use far better somewhere else. Acceptance doesn't mean you are giving in, it is learning to live with grace and you gain a great deal.

  • So sorry to here your news you must feel really bad. Take care. Thanks for sharing.

  • Hi Lin-Calif

    Interested in your comment re Methotrexate. Here it is given to help people to reduce the amount of Pred they take when hit by PMR - but think not for GCA...(PMR-Pro any thoughts?).

    I had PMR and initially couldn't deal with the drug due to awful side-effects; but by upping the amount of Folic Acid - and taking Folate instead of the chemical stuff dished out by the NHS, I managed and it did help me to reduce the Pred. However I found that it did not reduce the pain like Pred and I thought it not worth taking, until I realised it allowed me more movement if I pushed through the pain barrier gently (note the gently bit - so important).

    I weaned myself off it in the same way you come off tablet steroid - really slowly.

    Not sure if this helps at all, but am throwing it in just in case!

    Wishing you all the patience in the world to help you through the tough times and hope there's a light at the end of the tunnel very soon.


  • Methotrexate made me feel EXTREMELY ill. I felt poisoned. It also made me feel hypoglycemic sick and the only way to feel better was to eat. I told myself I didn't care if I gained weight as it was too awful to suffer like that all day and night. I finally went off of it 30 lbs. later and within a week I could control my appetite and am at present losing weight very slowly but it is going down and not up.

    My doctor told me it would enhance the prednisone and make it better by being able to use smaller dose. I have not heard from her since I told her I stopped the Methotrexate so not sure where she stands at present.

    She is far away and it is difficult to get to see her. In my area there are not enough Rheumatologist so no one is taking on new patients at present. My clinic is in the process of hiring a new one. I love my new GP and I think together we can manage my care.

    I am at present trying to learn about lab work so I can tell where I am.

    My Neutrophils are about 5,000 too high and myWBC is at 16.1 not sure where the infection is. Everyday is a learning curve.

    I stopped the Folic acid and wonder if I should keep taking it. I went from taking a thyroid pill and b/p up to almost 10 new drugs. I am working on stopping most of them. I need to know the benefit and why am I taking it etc.

  • Your total white count is high because the neutrophils are high - and they are high because you are on pred. It is a well-known side effec - pred probably has its action via neutrophils. It does NOT mean you have an infection.

  • Thanks, I read neutrophils showed inflamation in my body. Are there any indicators that show inflamation. How else would we know the prednisone is working?

  • ESR (sed rate) and CRP ( a protein) are the traditional markers for inflammation and are raised in 80% of patients with PMR and GCA. Ferritin is another marker that is raised in inflammatory states. But none of them are specific and even a chesty cold can raise them.

    How do we know pred is working? The symptoms are well controlled! That is all the pred does - it reduces inflammation to relieve the symptoms that it causes. It has no effect on the really illnes which is why some people still feel ill with the PMR. No markers are as reliable as that sign - raised markers but no symptoms means you don't assume the markers are showing active PMR. Symptoms are always king. All sorts of things can cause the ESR and CRP to go up and, as I say, the white cells are increased by taking pred.

  • Methotrexate may help some people reduce their dose of pred by changing the way the body processes it and making it more effective - there is no guarantee it works though. Three studies all gave different results. The most recent guidelines for the management of PMR suggest trying using it if there are problems expected with pred - if the patient is diabetic or already has osteoporosis for example. However, they say it should be an agreement made in conjunction with the patient. It doesn't replace the pred though - although I have come across doctor telling patients it will get them off pred. I know a few patients who tried it and are convinced it led to a flare when they got the pred down to low levels. If it doesn't make you ill and you want to it is probably worth trying. I'm far from sure I would - it has its own side effects.

    The general opinion I have met for GCA is that it has little role to play. Pred remains the mainstay for GCA - and the risks of underdosing pred are high in GCA. A flare of PMR is one thing, GCA is another kettle of fish.

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